My cousin Chelsie did a FAQ/101 blog on her little girls Cancer so after this most recent adventure with Cerebral Palsy I thought I would offer a little 101 on Ty and his Cerebral Palsy. First and for most, Cerebral Palsy is a non degenerative disease or rather condition. Meaning once the initial " damage" is done it is done. However, it may seem to get worse as they get older because of the changing of their muscles and growing. Also, every child with cerebral palsy is different. A mild diagnosis for one may include a talking but not walking child. Or one walking with assistance. OR it might show little to no impairment to the naked eye, while someone like Ty is visible. ( Ty does have a MILD diagnosis)
When does it occur? Usually Cerebral palsy happens sometime right before birth or shortly after. For some it is a "medical mistake" for others it isn't. I am not sure what you want to classify Tyler's as but his occurred about 24-36 hours after birth when he developed a brain bleed.( His was a grade 3 and 4. Grade 3 touch and damage some brain, grade 4 kills brain tissue) This bleed is when the damaged occurred.
Is it Curable? No it is not. Again the damage is irreversible and therefore there is nothing that can be done to change it. There are things that can be done as management of the effects of it but he will always have it.
When is it diagnosed? That really depends on the child, the doctor and the team of doctors involved in the care. Ty had an aggressive team of therapists to start but was not given a diagnosis for CP till he was 2.5. Some have received a CP diagnosis when leaving the NICU others before they turn one.
What Type of diagnosis does he have? Tyler has spastic diplegia cerebral palsy. Though he doesn't fit in that category completely he does have that diagnosis. For example, his legs are tight and his ankles are tight but his arms are tight as well. BUT they are functional. He can't touch his shoulders or straighten his arms out completely BUT he does have full function of his hands and doesn't keep his hands fisted ( which is common with children with spastic muscles) Therefore putting him in the category of hemiplegia is incorrect.
Spastic means he is TIGHT. Very TIGHT. For example, Tyler cannot sit Indian style because his body doesn't let him bend that way. When you change his diaper and he is upset he is VERY stiff and it is hard to get him to bend. He walks stiffly. So some muscles are working way more than its fair share. This type of muscle tone causes other problems. Hip dislocations and scoliosis are common as is bone deformation. Tyler does have bone deformation in his feet.
Ty will have skeletal issues with his Cerebral Palsy. His feet right now are the most obvious. They are somewhat deformed. His feet are also small. I haven't had to buy new shoes because he has outgrown them in over a year. His legs are smaller and he is overall SMALLER than a typical almost 5 year old.
What treatments will we be doing? Ty has been getting physical therapy once a week for several years. We drive to Salt Lake to get it at Shriner's because a typical insurance plan only covers for 12 visits a year and sometimes they won't cover for rehabilitation. In other words, they know it won't be cured so they don't want to pay for it.
Tyler also gets speech and generally he gets occupational therapy. These basically help him with day to day living. They make him "functional."
With his phenol he gets serial casting. Serial casting is when he gets a really good stretch with casts on that gradually gets better and better with weekly cast changes. Last time it was on for a month. Phenol only lasts six months.
Ty also takes a nightly muscle relaxer called Baclofen.
Ty won't be able to run and play sports like most kids. But he does do really well and finds ways to do what he wants to do. He is very good at adapting so he can do what he wants to do.
Support is HUGE. We need the support and want support. We are often over whelmed and we would love to be able to send him to a sitter or go out but finding a sitter for him is hard. We are thankful for those who do help us.
Please, we would love to answer any questions you have regarding Tyler, his care and how he functions. He is a great kid and we are more than happy to share!
7 comments:
Lots of good info! Couple of questions:
Are the bones in Ty's feet deformed because of the tightness in his foot muscles or is it from something else and exacerbated by the muscle tightness?
If left untreated, does the tightness get tighter and tighter indefinitely, or does it plateau? I know he gets shots and that those help for a time. Do they wear off (meaning the effects of the shot aren't permanent) or is it a constant battle against continued and unending tightening?
As for support- I'd be more than willing to sit for you, but I usually find out too late by reading your FB statuses. Feel free to give me a call, though. I work 4 nights a week (M-R). Do you prefer someone come to you? I'd probably want to have a play date a couple of times prior to make sure I can handle Daphne AND Tyler. I have no experience with watching more than one!
Great information!!! My brother has mild CP (even milder then Ty)but CP still effects him. I'm not sure what kind Jason has but he can't get his heels to touch the floor without spreading his legs out wide. He is always walking on his tippy-toes and his feet are severly deformed. My brother also had a hard time with his appetite, he is a lazy eater. He was in his late 20's before he got up to 100 pounds.
I wish Robin and I lived closer to you so we could help. Robin and I are already planning on watching Ty for an evening when we visit in August so you and Dallas could go out. We are doing it for a purly selfish reason though (we want more time with our nephew. HAHAHA)
I forgot to add SLY!!!! CU Soon!!!!
Chelsie his feet are deformed from the tightness which has caused how he stands and walks which then bothers the foot deformation. So it is a little of both. Most of it is just the muscle tone. They didn't start out like that.
No it doesn't plateau. With no therapy it will get tighter and tighter. We also stretch him at night. With out the stretching it also helps. The tightness changes as he grows so for the growing years it is even worse.
the shots effects wear off. They have no long term solution other than cutting the nerves. But what we found is he loosened up after the shots and used the other muscles and then when the shots were gone he was tighter than he was before the shots. It made him more frustrated with his body and moving than before.
And even if you don't get to baby sit him I think a playdate would rock... They both love the slides and swimming
Thanks for sharing this. We were in the 'watch' catergory for CP for our 1 lb. 15 oz. daughter. In her case, it would have been the result of oxygen deprivation at birth- we avoided the brain bleed thing narrowly.
Even though it was a possible dx for us, I've never really understood exactly what it is. I really appreciate you for taking the time to explain.
My right foot deformed: short heel cord, fat foot size for the length of the foot, curled toes on the foot, and the foot is on a leg that is smaller than the left leg by about two inches which makes for the contraction in the heel cord.
My foot defect has been on a body that has cerebral palsy. The foot defect has been since birth. This CP has been getting worse in old age with the seizures happening more often and being more severe when they do happen. I take more medications for the CP now.
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